I have had lupus with no organ involvement since May 1995. I had a rough 2 years with red blood count problems and joint problems since day 1. I have had a few minor problems of other nature in the 9 years. In Nov. 2003 I had pneumonia in one lung. Upon a complete blood count found low platelets.(52,000) My doctor started me on 20mgs. prednisone. Each 2 weeks we check the blood count. It goes up and down. So the doctor ups and downs the prednisone. I have been on this roller coaster for 3 months now. I despise taking prednisone. The side effects are horrible and I am worried about what else may happen due to prednisone use. Right now at the moment I am on 7.5 mgs of prednisone and the platelet count is 102,000. I need any information I can get regarding this problem and any personal experience anyone may have with this. We are just supposing that the lupus is what is causing the low platelet count or maybe the pneumonia caused the problem. From what I read 102,000 platelet count would be okay to live with, if we could wean the preds and the count would stay at that. Just looking for some good suggestions! Thank you and God bless Your day!

Saysusie

03-06-2004, 08:26 AM

Mtingler;
Here is what I found out about Thromobocytopenia (low platelete count):
Blood platelets are tiny pieces of megakaryocytes, which reside in the bone marrow. A low platelet count is termed thrombocytopenia. As the platelet count falls, bleeding may occur, causing: Bruises
Tiny red bleeding points in the skin called petechiae (especially on the lower legs)
Nosebleeds

Although thrombocytopenia is common in lupus, only occasionallydoes serious bleeding result. While there are many possible causes of thrombocytopenia, in lupus it is almost always due to antibodies. However, a low platelet count may briefly be aggravated by infection. On rare occasions, a person with lupus may have antibodies against both red blood cells and platelets.

Treatm of Thrombocytopenia
Most people with lupus who have mild to moderate thrombocytopenia do not need treatmentfor it.
When necessary, prednisoneand intravenous gammaglobulin (IV Ig)are used.
Other drugs such as azathioprinealso can help.
As in hemolysis due to antibodies, thrombocytopenia can sometimes be relieved by splenectomy.

Be sure to ask your doctor whether NSAIDs (Non steroidal anit-inflammatory drugs) can be used safely when thrombocytopenia is present.
You are very lucky to have no organ involvement with your Lupus. Since you had pneumonia in 2003, that may be the reason why you are now dealing with Thrombocytopenia.
I wish you the best of luck...keep us advised :P
Saysusie

mtingler

03-06-2004, 09:12 AM

Thanks so much for the response on the low platelets. I go see my rhumey on Monday so I plan on telling him the prednisone has to start being weaned. We will just see what happens. I am praying that they will stay up at least where they are now at 105,000 as we wean off the meds if the doc will agree on the weaning. I have been doing some other research and i have had 2 flu shots in my life and both times shortly thereafter I ended up with the blood problems. In fall of 1995 had my first flu shot and almost died with hemolytic anemia twice and then Oct. 2003 had my second flu shot and now the platelet problem since then. I even found on a government site that they recommend that you do not have the flu vaccine if you may have a comprimised immune system. Ha, what a secret they must keep that!!! :evil: It is a fact, we either watch out for our own lives or no one else will. How true. Glad we have each other to help with this. Have a great and wonderful day! :D P.S. I do think my rhumey jumped the gun :?: on putting me on the prednisone so quickly instead of watching the blood longer. Thanks for being there.

mtingler

03-06-2004, 09:18 AM

:shock: Oh yeah, I forgot, I am not allowed to have any NSAID's but thank God I have not had one pain since I began the preds. That part is a wonderful blessing but as you all know the side effects of the prednisone are killers! :evil: Oh, I really do feel as if I could run a marathon without Pain. Wow! :shock: I love that part of course, who wouldn't? :D Just one thing then the other, but we shall prevail! by again

Saysusie

03-07-2004, 07:57 AM

Mtingler;
There has been some debate amongst doctors as to weather or not Lupus patients should have the flue shot. Like you, I took a flu shot 2 yrs ago and ended up in the hospital with blood problems and on IV antibiotics for 14 days!! Never again!!!
The consensus, however, is just as you stated....with an already compromised immune system, we should avoid flu shots.
Let us know how your appointment goes and be very careful when reducing your Prednisone....sometimes that can cause problems also. Talk to your doctor, ask as many questions as you need and be confident in your decision!
Peace and Blessings
Saysusie

mtingler

03-12-2004, 04:58 PM

So I have made it back. Was at the rhumy Monday and to my hematologist today. I was really in for a surprise that did not suit me. :evil: The rhumy wants me to not only stay on 7.5 mgs. of prednisone he wants to add plaquenil to the list. :!: Yuk! I have to do some more research before I am gonna go that route. As I said, I believe he jumped the gun on starting on the prednisone with my platelets above 50,000. He hasn't even done any tests on my blood for over a year. My local health center does my CBC's every 2 weeks. Last time the platelets were 102,000 and today they were 92,000. I have no other lupus active at this time and I feel it is too soon to hit the plaquenil. I read in my Lupus book by Daniel Wallace that he starts his patients on low dose danacrine to help with the low platelets and leaves the prednisone out unless it gets really bad. I have taken high dose of danacrine in 1996 and it was an awful drug, for hemolytic anemia, but that was high doses. So then the hematologist, whom I was sure would want to help me but he said with this probably being the autoimmune ITP that I definitely needed my rhumey doing this case. He did agree that the prednisone was started at a low dose too soon and it is to be used at high doses when the platelets get way below 50,000. So I am back to square zero. Still on the preds. and now maybe plaquenil. Maybe the rhumey thinks that if I get going on the plaquenil and get it good in my system and get the platelets stable and off the prednisone then the plaquenil will take care of the joint pain, swelling and stiffness?? :?: But as I already stated I have no pain at the moment but I can't imagine what it would be again without the preds. Oh, what a viscious circle. But I think God I am still in the circle. Gained 16 pounds in 3 months on the preds. I needed it, now I weigh 134. No good way to gain it though! :shock: I feel as if my ruhmey hasn't got enough time for me at all, once every six months is all I go there. They are few and far between. He does specialize in Lupus but I think sometimes I know more than he does. Maybe I research it too much and keep up on things for myself????? I really do think that Plaquenil is for when you have Lupus really acting up? And it helps all the different systems? Maybe I need to look up some more info on it. I just don't want to take meds that maybe my system doesn't need yet, repeat yet. Does anyone have anything to add to this? I hope I haven;t rambled. It is just so hard to keep running to docs and trying to keep it all straight when the preds mess up your mind. My concentration is near zero and my moods get really bad, ask my 16 year old daughter :roll: Yeah, on top of it all, I see the psycologist (for the first time) Tuesday and the lawyer that is supposed to be fighting for my disability. Maybe I can get approved for a mental disability instead of physical? I don't mean to complain because I know others are much worse off than I am. It is just sosososos hard to cope with all this stuff. i haven't never worked outside the home and can't imagine what that would be like at this point in my life. I am 48 with no experience at public work. Enough from me for one time. :wink: Have a great evening.

Saysusie

03-14-2004, 05:47 AM

Mtingler;
Hi....I am sorry that your rheumatologist does not seem to have enough time to give you the information that you need (which would add greatly to providing you with some comfort). You are right to continue to educate yourself about the disease, its treatments and the side effects of medication.
I believe that the prednisone is part of the reason that you are not experiencing any pain right now. I also think that you are right about the reasons that your doctor wants to start you on plaquenil....to stabilize and perhaps begin weaning you off of (or at least reducing the dosage of) prednisone.
Almost all of us who suffer from this disease also add a therapist and/or psychiatrist to our treatment regimine. There is nothing at all wrong with that! In fact, I think that it takes an intelligent person to recognize that you need treatment for the emotional as well as the physical symptoms of this disease. So, "kuudo's" to you!!!
Keep learning about your disease, stay open and honest about your concerns and fears - especially to your 16 year old daughter. Don't be afraid to tell her that you are scared and that fear sometimes causes you to react irrationally. My therapist told me once, "Never be to proud to apologize to your children...they will respect you for that!"
Best of Luck..keep us advised!
Peace and Blessings
Saysusie

Angelic

11-18-2004, 11:39 AM

Even though this was posted a long time ago, I had to reply. I was just diagnosed with SLE last week. I have had horrible joint and muscle pain for about 2 1/2 months now and so they did a bunch of blood tests and determined that I had Lupus. What is all so puzzling is that in 1995, I was diagnosed with TTP, or thrombotic thrombocytopenia purpura, which is a condition where your body attacks the blood platelets. When I was admitted to the hospital, I had a platelet count of less than 10,000. I was told that once a platelet count goes below 10,000, they don't count any lower so it could have been 3,000. I was only days away from death. I was treated with Prednisone and plasmapheresis for three months. I have had no problem since. My platelets have stayed around 150,000 since. My rheumy thinks that maybe I may have had Lupus back then but no one thought that was what it was and they didn't test for it so we are assuming it was in remission for 9 years and I just recently had a flare up. I am only taking naproxen for pain, no prednisone and no immune suppressents. My DH and I want to have a baby first, while my kidneys are still healthy. We are both 27 and think that now is a good time for usto have a baby. So my rheumy is going to do some tests to make sure I don't have a certain antibody before we start trying. I already have a high risk OB, a perintologist, because they are afraid the TTP might come back during or after pregnancy, so now I have to add Lupus to the problems. Anyway, I just wanted ot share my story.

Angelic

Saysusie

11-23-2004, 01:31 PM

Hi Angelic;
Thank you for sharing your story. Let me say that we are so happy that you are here to share with us!!
I wish you the best of luck in having a child. Keep us posted! :lol:

Peace and Blessings
Saysusie

Missy

11-30-2004, 10:55 PM

Hi, Angelic -

I also wish you the best of luck in your health issues. I have kidney involvement and am 27 as well. Because I'm doing a bit better now and don't want to risk more kidney problems, we've decided not to have kids biologically. I hope things continue to stay stable for you.